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Comment by Sam on September 6, 2013 at 8:03am

I say you will never regret a healthy baby... I wouldn't chance the side effects as that is the first question they always ask me if I want to be pregnant. Maybe the hormones from bring pregnant will do the trick and try vitamins and diet in the meantime. Good luck on both fronts!

Comment by April on September 6, 2013 at 7:42am

I haven't really tried most of the treatments that are out there, mainly for fear that it will have a negative effect ony ability to get pregnant...not sure if this is the right decision...I just hope I don't regret it later. I know there are a few of you on here that might try for a baby. What have you guys used for treatment ?? Thanks!

Comment by April on September 6, 2013 at 7:22am

Debs, I have started researching the anti inflammatory diet and will hopefully start making some juices this weekend. Can't hurt right? I am pretty much not doing oral meds at this point because of the reproductive effects. If you get pregnant on plaquenil it is BAD. I am on the fence about the clobetasol because it is a testosterone mimicking drug. I guess the fact that I want to try for another baby complicates things a bit. I may go back in the laser treatments as I do believe they were at least sliwing down hair loss. I am starting tea tree oil shampoo to try to help with itching and have ordered some biotin. Worth a shot I guess. My hair has been falling out a lot more these past few weeks. It's been stressing me out a lot...Debs, do you feel dr. Weils diet is helping??

Comment by Debs on September 5, 2013 at 1:34am

April, I am doing the anti-inflammatory diet, check out Dr Weil on the internet for full details. It is not too heavy on protein and is promoting veg and fruit with other foodstuffs in moderation. I don't have any problems on it and you should find the amount of roughage in the veg and fruit helps your digestion.

April, have you also tried the hydroxychloroquine sulphate (plaquenil) that is a common first drug used by derms for FFA and has a 50% success rate.

Comment by April on September 4, 2013 at 1:43pm

Hey everyone! I have been pretty crazy lately so I have not been on here, trying to catch up with everyone's comments. I just wanted to update everyone as to what is going on with me. I saw my doctor today. About a month ago I completed my 10th treatment with the xtrac laser and received one rou d of kenalog Injections. We aren't really sure whether either of these are helping or not. I am still, slowly losing hair at the hairline. But we are not sure if it would have been worse without the treatment. Ugh, pretty frustrating. Anyhow, I didn't want to continue with the injections because I did develop some atrophy of the skin where they injected me. Nothing horrible, but you can feel a depressed area on my head. My doctor said that eventually resolves itself. Anyhow, now he wants me to try clobetasol and rogaine. I may go back on the extrac if it turns out it was helping. Not thrilled about trying these drugs. But, I know some if you have tried these. Anyone have success with these things. I'm worried it could make things worse? So frustrated here! My doctor is confusing and I'm worried maybe I should still be on the xtrac treatments? Ugh! Sorry I'm not being more positive. On another note, I am also going to see a rheumatologist for the widespread body aches and pains, fatigue etc. I have been dealing with this for about 6 years so also trying to get to the bottom of it. I had to abandon my paleo diet because it was actually making my symptoms worse, not sure why. I am still eating healthy but have had to add grains and potatoes back in. I was having trouble digesting all of the protein I was eating I think, anyhow, sorry for the long post. Hope everyone is well, I am learning a lot from your comments. Thanks!

Comment by Debs on August 30, 2013 at 2:24am

Carol well done for educating your doctors... I am horrified how in the UK patients with alopecia are not given any advice on support groups or wig info with a diagnosis. We are just told bluntly with are losing our hair and that's it... I have given my GP info on this website and several others but I very much doubt he will pass it on to other GPs in the practice or any patients.

I started wearing wigs when it got to the point that a wig looks better than my own hair... I get compliments on my hair all the time in my wigs, several times a day, it is unbelieveable. A complete stranger walked up to me a few days ago and told me how lovely my hair was! It is hilarious really. I was working with a girl last week that was wearing a wig. I worked with her a couple of years ago, so before I was diagnosed with FFA and had no idea she wore 'hair', now of course as a fellow wig-wearer I can tell because I am tuned into peoples hair whereas in the past I was oblivious. Her wig is very natural looking and nobody else would every know. I would love to know the brand she uses. I would not of course ask her because it is such a sensitive subject for most of us and I don't want to 'out' her so to speak even in private just between the 2 of us.

But the moral of the story is that for those of use that wear wigs - other people really can't tell it isn't our own hair because they are not looking at other people that closely and they just don't have wigs on there radar.

My anti-inflammatory diet (see Dr Weil's website) is going fantastically. I have lost a dress size, an unexpected bonus. My skin looks really fresh. I feel that it is improving my overall health and it is giving me peace of mind that I am trying to help myself. I am going to keep on it. I am also juiciing vegetables at least once a day to improve my nutrition further.

Have a great day everyone. XXXX

Comment by Annie on August 29, 2013 at 12:54pm

Hi everyone. It's a hot, humid day in Missouri today, and my normally straight hair is a frizzy mess. I was trying to tame the flyaways this morning when I noticed a bunch little short hairs sticking straight out. I started using Rogaine April 5, and the new hairs are about 2 inches long now. For once I'm thankful for a frizzy hair day to help me see that I'm making a little progress up there. I'm reminded that with FFA I need to rejoice in even the smallest blessings.

Comment by Annie on August 29, 2013 at 12:42pm

Comment by Jules UK on August 28, 2013 at 12:57pm

Annie, thanks for your advice on using Regaine. I'd been despairing of seeing any improvement; in fact the thinning on my temples is now such that I was about to ask hubby to start noticing how visible it was out in the big wide world and whether it was time to consider a wig. But last night I noticed some stubby, spiky hairs. Not fine, fluffy ones as some of you have described. But I'm hoping they're new ones! Should coincide with Plaquenil kicking in... Feeling hopeful for a slowdown at the moment. Oh, the ups and downs with this FFA. Xx

Comment by Annie on August 28, 2013 at 10:16am

PamW, thanks for the information. I did some research on Plaquenil yesterday, and it sounds like the results are slow and so gradual that you barely notice it. Now that I think about it, my face doesn't itch anymore, and I rarely have the crawly feelings on my scalp these days. At least that's an improvement. I can only use Clobetesol three times a week at most because it makes my scalp unbearably tender. An ice pack helps on those days.

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